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#181 - đŸ« Talking about BPD w the BPD Collaborative (Ft. Dr Abman, Dr. Cuevas Guaman and Dr. Eldredge)








Hello friends 👋

This episode of The Incubator Podcast features experts Dr. Steve Abman, Dr. Milenka Cuevas Guaman, and Dr. Laurie C. Eldredge from the BPD Collaborative, focusing on Bronchopulmonary Dysplasia (BPD). The conversation navigates through the complexities of BPD management, research advancements, and the significance of integrating family in care strategies, providing a comprehensive view on improving neonatal care practices. We hope you enjoy this episode.

Cheers!


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Find out more about the BPD Collaborative here:


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Dr. Milenka Cuevas Guaman: Milenka is an attending neonatologist at Texas Children’s Hospital and an Assistant Professor at Baylor College of Medicine in Houston, Texas. Dr. Cuevas serves in the Executive Committee of The BPD Collaborative and spearheads important missions of this international collaborative. She has dedicated her clinical and research career to bronchopulmonary dysplasia and is co- leader of The BPD Consult Service at Texas Children’s Hospital. She went to medical school at the Universidad Mayor de San AndrĂ©s in La Paz Bolivia. She completed her pediatric residency at the University of South Alabama and Neonatal-Perinatal Medicine fellowship as well as Research Training in Pediatric Critical Care Medicine at Baylor College of Medicine. She is passionate about diversity, equity and inclusion efforts, she serves in several roles and committees at her institution and in the AAP.


Dr. Laurie C. Eldredge: Laurie is an Assistant Professor in the Department of Pediatrics at the University of Washington School of Medicine and an attending physician at Seattle Childrens Hospital. Her primary research focus is in the pathogenesis of Bronchopulmonary Dysplasia. Specifically, she is working to understand the roles of monocytes and epithelial cells in the development of this inflammatory lung disease. She is an executive board member of the BPD collaborative. She earned her MD and PhD at Northwestern University Feinberg School of Medicine in Chicago, IL. She completed pediatrics residency training and a fellowship in pediatric pulmonology at the University of Washington.


Dr. Steve Abman: Steve a leading figure in pediatric healthcare, holds several distinguished roles that highlight his dedication to improving the lives of children with complex respiratory and cardiac conditions. As the Director of the Pediatric Heart Lung Center and Co-Director of the Pediatric Pulmonary Hypertension Program, he spearheads innovative research and treatments. Additionally, his roles as Co-Head of the Pediatric Task Force at the Pulmonary Vascular Research Institute, Director of the Ventilator Care Program, Founder and Director of the Pediatric Pulmonary Hypertension Network, and Founder and Executive Board Member of the BPD Collaborative, demonstrate his commitment to advancing care. As President of the American Pediatric Society, Dr. Abman's leadership and advocacy continue to shape the future of pediatric medicine.

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The transcript of today's episode can be found below 👇


Ben Host 00:00

Hello everybody, welcome back to the Incubator podcast. It is Sunday, we are here with a new interview and we have the pleasure of having on today with us three esteemed  Guest s. We have with us today Dr Milenka Cuevas guaman, a veteran of the Incubator podcast. I think this is your fourth stint, milenka. Dr Laurie Eldridge and Dr Steve Abman. Steve Milenka Laurie, thank you so much for making time to come on the show today with us.

 

Laurie Eldredge Guest 00:27

Thank you, Ben, for having us.

 

Ben Host 00:30

Thank you. I'm going to go through your bios fairly quickly because you all have. You are very well accomplished physicians. Milenka Cuevas guaman is an attending neonatologist at Texas Children's Hospital and is an assistant professor at Baylor College of Medicine in Houston, Texas. And Milenka serves in the executive committee of the BPD Collaborative and SPIR heads important missions of this international collaborative. She's dedicated her clinical and research career to bronchopulmonary dysplasia and is the co-leader of the BPD consult service at Texas Children's Hospital.

01:00

Laurie Eldridge is an assistant professor in the Department of Pediatrics at the University of Washington School of Medicine and an attending physician at Seattle Children's Hospital. Your primary focus, Laurie, is the pathogenesis of bronchopulmonary dysplasia and you're working to understand the roles of monocytes and epithelial cells in the development of this inflammatory lung disease. And you too serve on the executive committee of the BPD Collaborative. And then, dr Steve Abman thank you for making the time you are the Children's Hospital of Colorado when you're the director of the pediatric heart lung center, the co-director of the pediatric pulmonary hypertension program, the co-head of the pediatric task force for pulmonary vascular research institute, the director of the ventilator care program. You're the founder and director of the pediatric pulmonary hypertension network, the founder and executive board, member of the BPD Collaborative and the president of the American Pediatric Society.

01:51

So thank you all for making the time to be with us today, and I'm very excited to talk about BPD with you all. My first question for you is maybe going back to the basics of BPD, and while we understand we are probably all familiar with BPD being bronchopulmonary dysplasia, also known as chronic lung disease of prematurity and knowing that this is a complication of prematurity, but at this stage in 2023, 2024, what do we know about what BPD is? It seems like we have a clinical understanding of what this looks like at the bedside, but what do we know about the actual pathology itself?

 

Steve Abman Guest 02:28

So the word bronchopulmonary dysplasia is so intriguing because it makes it sound like it's a single disease and yet it's more of a historic term. I think that relates to the this clinical problem that we face that's relatively heterogeneous and multifactorial, and that it's clearly associated with premature birth, clearly associated with not just acute respiratory distress syndrome, which is so nicely understood and managed so beautifully these days with the advent of surfactant therapies and what we do in the delivery room and many things like that acutely. But there are subgroups of kids who are born prematurely with much more complicated courses, where they have prolonged needs for a respiratory support while in the NICU, but especially that when they get closer to term they may have variable requirements for therapies to improve how they're doing in terms of respiratory course. Some require very little support, maybe a little nasal cannula, oxygen to maintain good saturations and growth and other things. But others have terrible disease, severe disease. They require invasive ventilation with an endotracheal tube in place which we then like to switch sometimes to a tracheostomy. They require invasive and very careful respiratory management which is quite different from the early needs they had right after birth. They have nutritional needs, neurocognitive needs. They have so many issues going with their heart function and something you know pulmonary hypertension, for example.

04:08

And then once they leave the NICU, you know where we tend to think about BPD in terms of an NICU centric diagnosis or condition. That's when the fun begins in some ways. That's when we have these chronic issues of having recurrent respiratory breathing problems. And then even those who appear to be doing okay sometimes have terribly impaired lung function when measured by pulmonary function testing. And now we're learning more and more that these very kids born prematurely, with or without this label of BPD, can even have high risk for late COPD or late cardiac problems, leading to early congestive heart failure or having early problems with renal failure, kidney disease and so so it's really disease across the lifespan.

05:02

So the word historically you know, bpd has so much meaning and history behind it. When first described in 1967 by Bill Northway who is a radiologist, by the way, at Stanford University, really helped us build the foundation for this. But now the term we know is much more complicated as we try to have greater precision with which we use it to take care of our kids and their families, to design clinical research and trials, perform laboratory research that links with it, and so the term itself has a sort of historic value, but we must be very precise with what our concerns are and why, and and. Anyway, that's how I think about this in terms of a maybe a starting point for our discussion.

 

Ben Host 05:50

Yeah, that's. That's very helpful, Melinda Laurie. Anything you'd like to add or can I? Can I jump on to my follow up question?

 

Milenka Cuevas Guaman Guest 05:55

I guess the one thing I wanted to add that you talked about the Phoenician right and there are tons of publications coming about. Where should be what is the best? One that it pronostics the future, or that it defines the system at one age? That's, oxygen play a part of the definition or not? There are many things that are going around, but I think what we are forgetting is that maybe for we probably going to have is different definitions, one that we need to utilize for research maybe, and then maybe other ones that are going to be important for the clinical outcomes, in the sense that not every baby has the same type of BPD right. There are many phenotypes, endotypes and many other things that are going to make the difference in this baby. So I think we're very focused on trying to get this golden rule definition and we're missing the big picture.

 

Ben Host 06:55

Laurie. Anything you'd like to add?

 

Laurie Eldredge Guest 06:57

I just wanted to add to what Steven Milenka said in terms of that this is really a disease across the lifespan. I like the way Steve framed that. I think that, because of the longitudinal nature of BPD and its trajectory that we're still trying to understand honestly, there's really this unique need for interdisciplinary approaches to taking care of these patients both inside and outside of the hospital. That's one of the things we've been trying to do as a collaborative is bring together neonatology and pulmonary and cardiology and our dietitians and our occupational therapists to really take better care of these kids than we could individually and to really move away from a siloed approach to this very collaborative approach that hopefully will take better care of these kids throughout the lifespan of their disease.

 

Ben Host 07:43

Yeah, yeah, I think it's interesting because I love this quote from Albert Einstein that says that if he had an hour to solve a problem, he'd spend 55 minutes defining it, which seems like what we've been doing with BPD. Right, we've been trying to define this, we reached a point. Maybe we'll always say, well, the definition is what it is, let's start trying to look at the outcomes and try to mitigate outcomes. Is there an area of the management, I guess respiratory management of extremely low birth weight infants and the management of babies with BPD moderate to severe BPD? Is there any aspect of that care that we've really sorted out or do we still have lingering questions all the way through, whether it is from birth, all the way to 36 weeks and even beyond?

 

Steve Abman Guest 08:22

There have been major advances in the field. It's been really exciting to be in neonatology and being involved in pulmonary management of these babies, and seeing the course of events over the past 20, 30 years has been remarkable. And yet what the price of the improved survival of extremely preterm infants has been is that we have extremely premature babies 22-weekers, 23-weekers, 24-weekers and so there's a certain fragility of the lung, of the heart, of other organ systems most broadly, and so, even though the incidence of BPD has not changed over the decades, roughly about 40 to 45% of those born before 29 weeks is still the quoted range. Part of the reason why we're seeing so much of it is because more babies are surviving, because of improvements in antenatal steroids or factored, not invasive respiratory support, nutrition, all the small things we do with management at the bedside, with outstanding nursing care and respiratory therapists and others, and so I think these things have made a huge impact. But what we're seeing now is that, despite all of those things, there are things that predate birth that probably play a big role in the pathogenesis of disease, what we call antenatal determinants of disease. So it's more than just prematurity alone. It's what happens in terms of maternal smoking or high blood pressure, maternal diabetes, chorioamnionitis these things can affect how the placental performs, which then could adversely affect how the fetus is prepared, even for premature birth, making the susceptibility there and could be identified, of being higher risk even on day one of life because of all those intrauterine features. Then we superimpose on that the ability we can support them through this early course.

10:18

And yet, what to do with some basic things that then are postnatal factors that impinge on the outcomes? What to do with the patent ductus arteriosus and its controversies? Does that high flow then mediate higher risk for BPD and if not, always in what subgroup of babies does it have that impact? How could we manage the best way of using ventilator strategies, getting them off the ventilator, without doing it too early or too late? So many challenges that we face. So many many things have been discovered. There have been many improvements, but part of the product of success is we are seeing some tough cases that persist, especially in the category of what we call severe BPD, in that then we have babies who need very high levels of support. That's sustained. They have the worst looking X-rays, the most respiratory distress, the most cold morbidities. Anyway, those are all things that we're struggling with and to me that opened the door for why we needed the collaborative yeah.

 

Ben Host 11:24

And I want to get to that in just a minute. I think you guys have highlighted something about our understanding of BPD which is so critical to then have the discussion about why the BPD collaborative was pretty much a necessity, which is that in the old days we used to think as BPD as a pulmonary disease. It was how do we fix the lung? Which ventilator, which pressures?

11:46

But over time, as Steve mentioned, we realized that there are so many factors that are playing a role, whether it is cardiac, whether it is infectious, and understanding that there are so many other organ systems that are being involved, whether it is the gut microbiome we're discovering now having an effect on pulmonary outcomes. Can you tell us a little bit about how the disease has changed to where it is today, where it no longer can be solely managed by a neonatologist and there's a need for a multidisciplinary team, and what that multidisciplinary team ideally should look like, because obviously everybody's concerned about I don't want too many cooks in the kitchen, but so who has the right to enter the multidisciplinary team that's caring for the BPD, Cerebral BPD patients?

 

Laurie Eldredge Guest 12:33

Maybe, instead of looking at who has the right to enter the kitchen, I think about it as sort of you know, who has the privilege of coming together in this collaborative approach is sort of how I think about it.

 

Ben Host 12:44

I didn't mean it that way, obviously yeah, yeah, yeah.

 

Laurie Eldredge Guest 12:48

So we started our team in Seattle in late 2017 or late 2018. And over the last six years or so, I've learned so much from my colleagues and this interdisciplinary approach in terms of how to manage these babies, and I think every discipline has a unique perspective on BPD right. So I'm a pulmonologist. I care very much about what the ventilator settings are, what the numbers are, how the baby's work of breathing looks, how synchronous they are with the ventilator, whether or not I can get them more comfortable so that they can grow better and need less sedation and otherwise thrive as an infant, and so that's my focus always when I walk into a room, I immediately zone in on the ventilator. I've learned so much from my neonatology colleagues about treating the whole baby and we should really be titrating our respiratory support not to what their PCO2 is or their total bicarbonate level is, but really is this respiratory support enough for this baby to be moving forward with their developmental therapies? Are they doing the things that they need to do to be otherwise healthy and developing?

13:46

And then our cardiology colleagues also are a really nice compliment to everything else that we're doing. Sometimes we think we're doing great with a baby and then they have some worsening of their pulmonary hypertension, which implies that we're not supporting them enough, and then we change our strategy. Similarly, occupational therapists may say you know, hold up, you guys were in the room, you thought this baby was doing well. We disagree. This baby is actually doing worse than when they were on more support two weeks ago. And together we really come up with this better longitudinal, comprehensive, collaborative plan to use all of our unique perspectives and niches and really come together with a more really fine tuned plan to meet the baby where they are. And I just find it so enjoyable and this is what makes me run to work is to do this kind of work in a team based approach, and I'm just so grateful to be part of our team.

 

Milenka Cuevas Guaman Guest 14:35

One thing I want to say. I don't think it in a cell means you know how many people are. I think it's important of the mindset of the entire group, no matter who it is in the group, and that we also need to think about. This is a chronic problem and what I do today is probably not going to you know, I'm not going to see a result for several days, weeks, even months, but if you don't have that mindset, then the next petition or whoever comes, it's going to change something and it's going to change something and it's going to influence what is going to happen, your long-term outcome. So I think that that's what is important having that mindset that is actually chronic and, in a way, maybe boring. For some Neos went to do their Q-stuff right the delivery room, not necessarily to manage this, and that's okay because I need them to be there. I need them to be managed. That's acute and that part and all that. But then the chronic it's still important still needs to be managed.

 

Steve Abman Guest 15:47

Yeah, if I can add to that for a second, because part of us were trained whether you're a neonatologist or not, we trained in critical care and that was part of my background was critical care pulmonary. For neonatology there's a critical care aspect, but it's different from exactly what Milenka so nicely described in the sense that the changing philosophy like early on with acute illness, our goals to get them off the ventilator quickly, to get them going as smoothly as we can. Yet there's this subgroup of baby where that may have adverse consequences and I think, appreciating that the change in philosophy from acute care to chronic respiratory support, a supportive mode to optimize all the things that Laurie so nicely expressed as well about what our long term goals are. And philosophically it's one thing, but actually the pragmatics of doing this is another, Because so often in our units, whether it's the NICU or the pediatric ICU or cardiac, we change attending so quickly, we change teams so quickly because of the demands. But these babies require a consistency of care and understanding of where they've come from, what they've gotten to or the part they're at now, how to move forward.

17:08

So the one thing I'd like to add to the conversation is the term of a communication, Communication with the families. Consistencies of care could be so much better by having team engagement, having the same folks who could still influence discussions and having diversity of folks who are there, but making sure the families get to communicate readily with staff, that we have the same sort of message and goals, even when there are disagreements. There are things that we could do to then decide on the next course of action. And yet if we don't communicate together, if we use the acute care paradigm, then I think we drop the ball on these kids. They don't do as well and we're not serving the families well either, and so so that's something I wanted to bring in.

 

Ben Host 17:58

Absolutely, absolutely. I think that's such an important point and, interestingly enough, you guys mentioned both mindset and communication, and I think it leads us nicely into 2012, where the first step into the creation of the BPD Collaborative. I think the story of I wasn't there, but the story of how the BPD Collaborative was born is such a fun one and such an innovative one. Steve, can you tell us a little bit exactly what happened in 2012 and what was the impediment for saying, hey, we need to get this off the ground?

 

Steve Abman Guest 18:28

Yeah, well, really it's such an interesting thing, isn't it? Because every institution on its own was trying to struggle with managing these kids and how to come to grips with the fact that we have absolutely no guidelines with how to care for them. There are no real consensus. We certainly had no multi-center randomized controlled trial data. We had very little information and, on top of everything, we were starting to see more and more of the kids, not just with mild forms of BPD, with a little bit of oxygen by nasal cannula, something like that, but these are really still pretty sick kids and we're all struggling with them, and the numbers were growing. So we started having a series of informal meetings where we discussed approaches and we came to realize that it's one thing we still have to struggle with how to prevent disease, absolutely.

 

Ben Host 19:20

I was told these were not meetings but lunches. I was told there was a few. I was told there was food involved, the best food involved.

 

Steve Abman Guest 19:28

by the way, you know you're exactly right.

19:31

We had a series of lunches and they were just fantastic discussions and we came to recognize that we have a lot of information from our own experience to share and that, even without the kind of trial data and guidelines that just having discussions of what these challenges were and helping to define the problems, having these conversations it really brought together.

19:56

The idea is, you know what we need to do this with regularity. We should probably open the doors to having many centers involved. In the idea of linking the subspecialties, the neonatologists and pulmonologists and cardiologists and everyone else, the developmentalists, the you know, all the folks together became very readily apparent and that was really the lead to the origin of this idea of having this collaborative is. Look, we don't have the answers, but together we can get smarter about it, better about it, provide better care and help with our families and those were the most important motivators. And, on top of that, having academic career development opportunities for folks who are coming out of training to develop a new career path within that and encouraging again the interdisciplinary collaborative atmosphere to help lead these things.

 

Ben Host 20:53

What's interesting to me is that number one the inception story of the BP Collaborative does reflect this mindset that you guys mentioned about being collaborative, because my understanding is that you met not just neonatologists but neonatologists and pulmonologists in that case. So I think I think that says a lot about, already, the open-mindedness of the group. And another interesting aspect of this is the institutions that are represented at these initial meetings. You would expect that a collaborative would involve centers that are quote unquote struggling with either numbers or with either not having enough patients, but yet this included Brown Chalk, Colorado, johns Hopkins, children's Mercy, nationwide and Texas Children. These are very big centers that we would all have considered at the time to be some of the centers that have the most experience. So what can you tell us a little bit about number one, the centers that gather together, and what did it mean for the idea of collaboration and what were the foundational work that was set up at these initial meetings for what the BP Collaborative has become today?

 

Milenka Cuevas Guaman Guest 22:01

I think part of it is that if you think about severe BPD, it's relatively uncommon If you put, even if you go to these big centers right inside, so no one single center has enough of these kids to do the research that we will consider, you know, highest standard control trials. So that's why we agree that we needed to work together and the only way is to, you know, put the numbers together. So I think one of the biggest things that has come out from the collaborative is the registry it started registry and a registry that only is not only the NICU state, because you know, right, you could say that many neonatologists registered, but on top of that we have the outpatient registry so we can follow up these kids. The course doesn't end at the end of the hospital stay. It continues as they follow up and we can see, you know, the outcomes, the true outcomes that we're talking about on the lifespan.

 

Ben Host 23:08

Laurie, I feel like you wanted to add something.

 

Laurie Eldredge Guest 23:11

Oh no, I just think it's very exciting to be collecting and analyzing data across centers. I totally agree with Malinka that our shared knowledge is so much greater than any individual one center. I think that's true in the research that we are doing. I also think that's true in our monthly case conferences. So we will present a difficult case and ask colleagues for help and solutions and different perspectives, and on the clinical side, that's been immensely helpful to all of us, especially those of us that are probably more junior in terms of learning from our peers about how to tackle a difficult case, what things to think about, and so I feel like there's been so many layers of how we are trying to improve care for patients with severe BPV, from research to clinical care.

Steve Abman Guest 23:56

And I think there's a richness too about this idea of how we approach things differently, in how certain challenge we might take different tax towards solving it. And that's where Malinka said about having the registry to document these patterns. We could actually do some early stages of research along those lines to see what this variability is about. But one of my favorite things here is that a little phrase that we could all agree I could agree with you, but then we both be wrong. So part of what we're trying to do is how do we know what we're doing is correct? So when we do agree, we're doing the best we can for outcomes and how our families do.

24:40

So it's a rich blend of saying is that what you do? Well, I don't, and here's what you do, but I don't or I do not, and so these discussions are so enriching in their own right. And yet the registry then you put down on paper or by website now, but you have the information there so we can see these patterns, we can see associations. Then we could design even more focused clinical trials or research questions to get more precise, and then we have data to enrich our ongoing discussions. But it's this process of challenge and be challenged, express the physiology and what you want to do about it and express what you're finding as being the biggest questions that are persisting. And to me that's what I really enjoy, even from all of our case conferences, everything we do it's been. Sometimes the disagreements lead to us to challenge ourselves, to then say let's sort this thing out, and that's where the advances I think are being made very nicely.

Ben Host 25:45

And the willingness to be challenged is something that says a lot about the members and the institutions that are part of the BP collaborative.

Milenka Cuevas Guaman Guest 25:54

In the same room that not one center has enough patients for this. But how do we learn from each other? So we've been doing, and we have now done, three studies, three point prevalence studies to kind of see how the centers do things regarding BPD, how are at least the outcomes of those patients, how our population looks. Then we have a second one and a third one that are related to pharmacology and another one to ventilator management, to be specific, and so now we're going to do one or neurodevelopment.

26:30

We just completed the data input, literally nine, 10 and 11 of November, and so there are many things that are coming that we're this is what we do in my center, and if people think, hey, that seems reasonable and my work, can we use it together? And so now we're starting to use those tools and distributed in different places and tested in different places, and so we're going to have soon a nutritional study and nutritional assessment study. Hopefully soon we'll have also an ASD assessment study and we're going to have another on tracheostomy, a tracheostomy tool and assessment, and so I think we're moving, we're trying to move the field and trying to improve our research as we can together. This is not going to be one center and I think, the other good point that the team made and I want to make sure that people that are listening there is future for more neonatologist or more pulmonologist, that one can come and do this. There's so many studies, research, qi that we can think that we don't have enough hands to do it, so they want to join us.

Ben Host 27:48

Yeah, and so then I guess, talking about growth, you started out in 2012,. Seven centers Can you tell us a little bit in? What are the numbers today? How many centers are a part of the collaborative and how has the collaborative grown since then?

Milenka Cuevas Guaman Guest 28:00

So I did the math. So we're 42 centers. Thank you, moinka. So 42 centers we're 37 centers across the United States and five international centers. So we have Italy, we have Japan, we have Germany, we have Sweden and we have Canada. So that's how we've grown so far and I think we have a good path. We have set a good path in terms of growth. But I think one thing that I don't. I don't want everybody thinking that you need to be part of the BPD collaborative or have a BPD multidisciplinary team. Everybody needs to run and create one, right? I think we still need to think about the disease and how it develops, and there are going to be centers that are probably going to be a referral centers for these type of kids, the severe BPD. Not every single center is going to be able to supply with all of the things that these kids need, but we can learn from this, sharing knowledge, even from Japan, Germany, Italy, canada. So I think it's going to be very important as we start sharing our data with all of these centers.

Ben Host 29:16

And so what's interesting is that each center that you mentioned collects data independently to towards a database that is shared by the entire collaborative, and I think that that is a goldmine, I think, for anybody wanting to do research or trying to understand BPD a little bit better. So if people are listening and saying, hey, my center should be a part of this, what is? Are there specific criteria to join the BPD collaborative and what does the application process looks like?

Steve Abman Guest 29:42

It's actually quite simple. In other words, we're not too judgy, we're very supportive because we're trying to encourage optimal care for our kids and their families as the bottom line, and so we're not. We do. We are connected with academics absolutely, and I'd like to talk a little bit about that later but we also feel that, just to optimize care getting opening the doors to the NICU what we started talking about at the very beginning of this discussion opening the doors to some specialists, having the conversations, teaching physiology at the bedside, or thinking about the physiology and not simply a simple algorithm that's been prescribed that may not relate to your patient specifically enough.

30:27

So really challenging the way we think provide care by making it interdisciplinary.

30:33

There are many things we'd like to influence and we'd love for a lot of sites to achieve these goals.

30:39

To get there, though we're trying to encourage that they truly are interdisciplinary, that they truly have the links between the specialties, along with the neonatologists, that there's certainly our supportive services that we feel are part of a programmatic care program, to have some resources to be engaged in, interest in being engaged in a lot of the activities of the collaboratives in terms of conferences, entering data into the registry and things like that, and so they're really important.

31:13

And yet we really are really trying to encourage even centers that are just launching to put together these kinds of things, and by expressing them on the application, it's more them thinking locally than really a question of will they be accepted or not. In other words, we try to use the application for them to think through what am I missing at my own nursery, my own hospital system that I could do better, and by getting it on paper and having that as part of the application, it actually has a feed forward process of improving those things. As they decide then whether they're selected for the collaborative or not. But most of the time we're really trying to be more open and encourage all levels of teams to join us, because they really enrich the discussions and the goals that have been mentioned.

Ben Host 32:07

So one of the things that we talked about throughout this episode is that BPD is a complex disease. There are many aspects of the pathology that we could look at, whether it is from a cardiac standpoint, pulmonary hypertension, nutrition, all the things that are connected to BPD. How does the collaborative approach, all these potential opportunities for research? Do you guys do this sequentially? Do you guys have focus groups? How does that work?

Milenka Cuevas Guaman Guest 32:29

So we call it ad hoc groups. I don't know why we decided to call that, but that's why we call it ad hoc groups. And so we have epidemiology, we have the PH-SOC group, we have ventilations group or mechanical yes ventilation subgroup.

Ben Host 32:46

The PH means the pulmonary hypertension subgroup right.

Milenka Cuevas Guaman Guest 32:49

No PH is pulmonary hypertension yes, no acid-base.

Steve Abman Guest 32:54

We'll have a new group. We'll have a new group.

Milenka Cuevas Guaman Guest 32:58

We'll get that one too Sorry. Nutrition we have the advocacy, we have the patient care nursing care subgroup, we have neurodevelopmental subgroup. So we I don't think I'm forgetting any of her group right now, but that's there is a advocacy group.

Laurie Eldredge Guest 33:21

I think you started to say that.

Milenka Cuevas Guaman Guest 33:23

Yes, the advocacy group. Actually, I want to highlight the advocacy subgroup because at the end of January 2024, we're going to launch a Zoom parent support group. So it's not just for you know, so it's going to be for everybody in the nation and our international centers too.

Steve Abman Guest 33:45

Can I add to that briefly because that is so important. The other thing we have these annual meetings where we get together as a collaborative. That's linked with if. Children's Hospital of Philadelphia plays a big role in organizing this Milenka is one of our leaders with that where we have sort of a conference for a day and a half right on different topics. But Milenka and others have always encouraged the families and the parents to present there, has always encouraged that we talk about issues of diversity in terms of establishing parallel outcomes, making sure we're not letting socioeconomic factors or any kind of implicit bias affect the outcomes of our kids and their long-term outcomes as well, and so having the families there, social workers there, palliative care teams, and so the advocacy part is something that's incorporated into the very soul of the BPD Collaborative as well.

Ben Host 34:46

So you're touching on a lot of subjects that I wanted to actually ask you about. So, number one, the advocacy work done by the collaborative, tamara Lewis, being one of the main investigators who's published a lot on this is quite incredible. Let's talk about the BPD Collaborative meeting. So you guys meet once a year in association with the Children's Hospital of Philadelphia. What is the goal of the meeting and what do you guys aim to do at this conference?

Milenka Cuevas Guaman Guest 35:12

So I think that we, I think, a way of two goals. One is a little bit of kind of administrative meeting and giving opportunity to each ad hoc group to present what they're being working on, what the future is going to be, and at the same time giving them time to meet in person, because it's different and so they can plan, move ahead. And we have many groups, that many people that have been here for years, but they're people that are joining. So we want to group all of these groups together and kind of give them the same information and so everybody can succeed. So that's one.

35:50

But the other one is give opportunity to talk about research or QI or the things that are important to us in the sense of if we're struggling with drug customers right now, or if we're thinking about genomics, if we're thinking what are the things that we're struggling in our kind of individual centers, that we want to bring a conversation together.

36:13

So we have panel, we create panels, and so we kind of always ask the members what do they want to hear about, what are their struggles, what are the things that you need to talk about or you want to talk about? And we try to always come up with speakers that are from our own side too. So you're highlighting our junior faculty of what your sides are doing, that we might not be hearing about it right or it might be published, might not be published, but there are things that you're working on and so I think that's one of the things that is also very important and hopefully in the future, at least that part of the meeting it's going to probably also give people that are outside from the collaborative and it's going to be important how we move forward with this part of the meeting.

Ben Host 37:04

Steve, go ahead.

Steve Abman Guest 37:05

Yeah, can I add a little bit please, cause I want to bring Laurie into this conversation, cause Laurie represents the very best along those lines. Laurie's doing laboratory science linked with her clinical interests and clinical goals, and so she's playing a big role in having more translation of other science and research. And so, Laurie, do you want to comment on your thinking on that and plans and stuff?

 

Laurie Eldredge Guest 37:29

Oh, thanks, Steve.

37:30

Yeah, just to add to what Malinka was saying, I totally agree.

37:33

I think one of the most exciting parts of the meeting is the growth of these scientific sessions where people are presenting all types of research, from QI to clinical research to translational science, and one of the things we're trying to do is add a translational science working group to the collaborative, really trying to have better predictors of long-term clinical outcomes using different biological specimens, from blood to cells from tracheal aspirates.

37:59

I'm particularly interested in the aeroepithelium, in how BPD develops, in which kids develop hyperinflation and severe away disease. But there's a lot of really interesting questions to tackle and, just like everything else in the collaborative, we can tackle those so much better together as a multi-center approach than we can in any one institution, both because it's more of a rare disease to get samples from these patients that are more severe, and two, we want to be able to have translatable findings across the entire BPD population, and so doing multi-center approaches is a much better way to do that. So we're sort of on the ground floor of this, launching this translational group and with the ultimate goal of establishing a biobank for rare specimens and then ultimately, we hope this will lead to multi-PI NIH applications for further research on the translational side of BPD pathogenesis. So yeah, I hope that answers your question. Thanks, Steve, for bringing it up.

 

Ben Host 38:52

I think it's interesting because you guys are mentioning the growth of the collaborative, You're mentioning all these ad hoc groups and yet I think it's a huge opportunity for trainees, for young career mid-career physicians to join these groups and really focus on a problem that potentially could be solved within one's career. And these groups are not overwhelming. They're usually a small bunch of very friendly people and I think they each one represent a great opportunity to join a team, collaborate with centers around the US and around the world, and I think going to the meeting and connecting with the teams there and then participating, I think is a huge step and it could be a huge step in someone's career and I think that alone could potentially drive people towards the work you guys are doing.

 

Steve Abman Guest 39:40

Ben, thanks so much for that comment. You're spot on. That's exactly what this is about and, in fact, one of the conferences that we had, we had a discussion on team science and the dynamic of team science and how to encourage career development within that context, and supporting more of our junior faculty being more engaged, also being the first authors on projects, but having the support of others and the networking is tremendous. Very rewarding relationships across multiple sites are established, and so to me, that's how we could enhance our pool of talented clinicians and clinician scientists for the next generation as well. So, yeah, Mm-hmm.

 

Ben Host 40:25

I then wanted to go back to something that you guys mentioned, which is that you are very conscious about trying to involve both patients and families in the work being done by the collaborative, and I think anybody listening will be like why the BPD parents are usually the ones we, as neonatologists, fear the most. They've been there so long, they are so frustrated because obviously things could have gone better and their baby is now suffering from chronic lung disease. Can you tell us a little bit about what these families have brought in terms of their input towards the collaborative, and what can we learn from these parents and these patients?

 

Steve Abman Guest 41:03

Everything in a word, but I don't know Probably too much. I don't know if you guys want to handle this, yeah.

 

Milenka Cuevas Guaman Guest 41:09

So I think I'll start with at the bedside. I actually those are the families that I like the most because they actually going to have information about the baby, sometimes that anybody else in the team. They really know their kids At some point. It's probably some of the people that I admire the most because, for the same thing you are saying, it's such a chronic process they have gone through and so many ups and downs and now we're here and kind of having travel launching right getting out of the NICU and there is still there every day to try to accomplish that and they see the big picture that maybe we don't see. So that's what I get from my parents at the bedside.

42:01

Now, in the collaborative and how we involved, it is that when you don't have, for example, here, sometimes we are thinking about putting a baby on a trach and so we'll try to contact a family that has gone through this journey to help this family decide and go through that journey.

42:19

So at the level of the collaborative, we have parents that are like, if you want a junior or middle career into this or they have graduated, and so having that perspective, that it is and there is a light at the end of the tunnel and, yes, you have to go through all those hopes. That's what these parents bring up to these other parents, because it's hard when, like we said, I can have two BPD kids, let's say, together in the same kind of area or pod, but everybody else is kind of on their cute face and they're leaving, or they don't have BPD, a chronic problem Then where do my parents go If we don't have this community that we're trying to create at the level of their parents to then they cannot discuss the same things If there's not the same understanding of sharing stories. So I think that's what I get from my parents here and locally, and also the parents at the national level.

 

Ben Host 43:21

What about you, Laurie? I mean, what is your experience and do you see these families also outside the NICU?

 

Laurie Eldredge Guest 43:28

Yeah, I think that's one of the things that I love about B2B care. Is this sort of longitudinal approach right? We follow babies through multiple transitions in their disease course, so from the NICU to the PICU, to the floor service, to the outpatient setting, and we really have a unique perspective on how these babies are doing over time and you really get to develop these very rich, deep relationships with families over time. We've had babies that have been in the hospital for years and of course, we know those families extremely well. I agree with Milenka, these families are heroes in my mind, right what they endure to be present and take care of their kids in a very tough situation.

44:07

I've had the pleasure of being part of the advocacy group that's led by Dr Audrey Miller at Nationwide and we have had some parent advisors come and talk to us about what would be helpful and there's lots of themes.

44:20

You know, from a clinician's perspective, these babies are ever so slightly but truly getting better over time and so it's we see them in a very positive light and that things will get better with good growth and time and patience. And the families simultaneously are really dealing with so many other things like grief and trauma and distrust and changing providers all the time, and so really trying to listen to them to figure out how we could provide more support is how this Zoom program came to be. We really identified that they need more peer mentorship. They don't need to hear more about us, from us about BPD, path of Dental Assist, that need to connect with each other to figure out how to ride through this storm in a way that fits their family. So, yeah, we're really excited to launch that in the next couple of months here to hopefully provide support across the nation and eventually internationally.

 

Steve Abman Guest 45:09

Oh, I just want to, you know, really echo that because there's inspiration. Frankly, you know, I think the courage or the challenges, the taking them on and not that they're always perfect right, there's a strife, there's conflict, that'll be there, but we understand the dynamics better. We could be better at our jobs. That way Do they also make us happier and more satisfied with our jobs? Because we see the challenges. We could really work at so many different levels to improving care, but working with families is vital.

45:39

But also, I always think this is as I explain things, or think I'm explaining things sometimes is the most innocent of questions or the most specific questions. Right, that makes you rethink do I really know this? And if you're transparent and honest and use simple language with expressing goals, you sometimes realize that we don't really know so much that we need to study something different because of a question that was raised Does my baby really need a fund application? Well, I could see yes or no on my bias and things like it. But you have to be honest and saying you know what. I'm not really sure and here's why. And so when we do get back together as a collaborative to decide of how we're going to use registry data, do another study. Sometimes it's stimulated by those very questions that are raised by our families that make us really realize where the gaps in our knowledge currently are and how to better address them. So it is a two-way street and part of the rewards is Laurie mentioned, yeah.

 

Ben Host 46:44

I think when parents ask you whether it is the right time for a tracheostomy, I mean, they just put the finger on the pulse of something that we are still trying to figure out. Huh, exactly right. As we're getting close to the end of this conversation, I wanted to maybe ask you one more question, and that would be, of all the work that you guys have done with the BPD collaborative, what is the one work product that you are the most proud of? My favorite from the BPD collaborative is the paper that you first author, Steve, in 2017 in the Journal of Pediatrics, on the interdisciplinary care of patients with BPD. That's my favorite, so it has yet to be dethroned, but I'm just curious which one is.

47:22

What is the work product that you guys have been involved in that you're like this is really something. That's because it's kind of nice when you start a project to collaborative and you're not sure exactly are we going to matter? Are we going to have a meaningful impact? And then, when you see a work product, something that does have a measurable impact, being published or being used in other institutions, I think that is the consecration of all the work, and that's why I think it's interesting. I'm getting interesting to hear which one is which for you guys.

 

 

Laurie Eldredge Guest 47:51

I have to say that paper that you just mentioned of Steve is also my favorite and that's how I teach the residents about BPD. I start with those figures and move through how we think about the approach to chronic ventilation in patients with cerebral BPD. So that's my favorite going backwards, going forward. I think one of the things that I'm probably being a part of is in our ventilation subgroup, like by Robin McKinney is this point prevalence study that Malinka mentioned, looking at different strategies for mechanical ventilation in patients with cerebral BPD, and we identified three really different strategies and now we're starting to dig into whether or not that represents practice variation across centers or whether these are phenotypically different patients that need different strategies. And so that very simple point prevalence study is really hypothesis generating and leading to the next stages of research into how we better support these babies, and I think it's really exciting.

 

Steve Abman Guest 48:44

So first of all I like to say the paper I get a lot of credit for is again a team effort, absolutely, absolutely.

 

Ben Host 48:50

An interdisciplinary effort.

 

Steve Abman Guest 48:51

To me it was a joint effort, so it was really reflecting all the conversations and getting to know folks that didn't really know very well, and it was so much fun. It was a joint collaboration. But I also like to flag what you mentioned for Tamara Lewis's work with Matthew Hilt as well. The two of them in terms of the disparity questions and what it raised, especially post George Floyd and so many so much growing awareness and academics more broadly and that we're responsible for, the social and economic forces, understand those and bias and how we give care, even within our medical centers, where we think we sometimes above the fray on these issues and things are unmasked by these questions, and so to me it stimulated a lot of deeper thinking and that paper represents a started looking at that that I thought was so helpful.

 

Ben Host 49:45

And you're not escaping that question. I know.

 

Milenka Cuevas Guaman Guest 49:48

Well, for me I have to put it in, I think, in different perspective, because I joined as I was finishing my fellowship. So the BPD collaborative, I joined as I was finishing my fellowship and for many reasons it really became my academic career and I, I mean I know it sounds silly to say I feel like accomplished now and I mean I know I still have many years to go. I know that Let me rub, but I went from, you know, like having meetings of seven, eight people, to now having meetings with 300 to 400 people gone from. You know we're planning the registry to now. I have a manual operation and we have people that help us with the registry in many ways. We have Sarah Kors, chan Lee and then even creating the meetings I've been doing I've been the chair for the annual meetings for the past five years too and so creating new content, getting people ready and encourage, you know, and I'm still having that, that energy that gets from other centers, and still getting the energy from all of the people, because pretty much almost all of the people that we started are still working on it.

51:15

So for me it's creating, I mean in a way it's creating my family outside from work, and so I think that's that's what I'm more proud about. I can even remember things in my life like my. My kids go to the meeting, people know my kids, and so even that it is. It just is. It's a family.

 

Ben Host 51:38

So, as we wrap up, can you tell us a little bit about when the meeting will be taking place in 2024?

 

Milenka Cuevas Guaman Guest 51:44

Yes, I'm going to try to remember.

 

Ben Host 51:50

As people are maybe wanting to find out more or maybe join the BPD Collaborative, I'm going to direct people to the great website that you guys have launched not too long ago, the BPD Collaborative.org. We will link this website on the episode show notes. But you are also active on social media. You are present on ex, formerly known as Twitter, at B underscore, bpd, underscore, collab. We will also link that in the in the show notes and from there you guys can find out more about the Collaborative. There's actually contact information to inquire about joining the Collaborative and has all the types of information that we brought up on the on this episode, milenka. Do we have a?

 

Milenka Cuevas Guaman Guest 52:29

Yes, yes, yes. So it's March 6th and March 7th 2024. And that will be in Philadelphia it's going to be in the Hilton Philadelphia at Penn Slanted.

 

Ben Host 52:40

Beautiful, beautiful.

 

Milenka Cuevas Guaman Guest 52:42

And it's all in person this year.

 

Ben Host 52:45

Yeah, human connection is what matters most.

 

Steve Abman Guest 52:47

And it's always sunny, even if it's a March.

 

Ben Host 52:53

It was a great conversation. Thank you, milenka, thank you Laurie, thank you, Steve, for making the time today. I think we all learned a lot, and congratulations on all the work that you guys are doing with the Collaborative.

 

Milenka Cuevas Guaman Guest 53:03

Thank you so much, Ben.

 

Steve Abman Guest 53:05

Thanks so much.

Laurie Eldredge Guest 53:06

Thanks Ben Okay bye-bye, take care.

Steve Abman Guest 53:08

Bye-bye.

 

 

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